A family’s pledge to help earlier diagnoses for amyloidosis patients

Barry’s wife Anne-Marie passed away in May 2021. She was days away from an appointment at the National Amyloidosis Centre at the Royal Free Hospital. Now Barry is determined to help other families get the care they need before it’s too late.

Anne-Marie had been ill for 18 months. Despite many tests and biopsies, doctors had been unable to find the reason for her symptoms.

During the pandemic, she fell very ill with Covid-19, and due to worsening symptoms she underwent a tracheotomy. It was during this hospital stay that surgeons noticed signs of amyloidosis – a group of conditions that cause an abnormal protein called amyloid to build up in the body.

Anne-Marie was referred to the National Amyloidosis Centre, one of the world’s leading centres for amyloid research, but sadly she passed away before her first appointment.

“No one could find out what it was until it was too late. Through fundraising, we hope we can give others a chance to get an earlier diagnosis.”

Now, Barry and his children are determined to raise awareness of the condition and to fundraise as much as possible for the Royal Free Charity in the hope that people with amyloidosis can get diagnosed and treated faster.

Barry has organised a golf day at his local club, Blake’s Golf Club. As well as prizes for the winners, the day will include a 2-course evening meal. He hopes that by inviting golf enthusiasts and friends he will not only be able to fundraise towards research, but also make more people aware of amyloidosis.

Lead photo: Anne-Marie and Barry pictured at a wedding with their daughters